2/26/2009

I read two things today that struck me and brought tears to my eyes. One just flat out made me cry.

#1 - (tears) received an email today from my friend, Leigh:

Hi Melissa and Andy, I just wanted to share this personal blog posting with you. I thought you might like to hear how your son still inspires me every single day. Love,Leighp

Big Bear and Max Mikulak At Big Bear, I skied!!! The last time I skied I was 13 years old. I had gone on a youth group ski trip with my best friend from church, Chip. He thought he would be funny and take me up to the highest slope---we were in Vail, CO. I think it was a black diamond, but I don't know my way around the codes and colors, so it could have been purple stars. Seriously though, I was terrified of the chairlift, so he said we would ride to the top to overcome my fear. Hmmm....no one said anything about not being able to ride back down. So there I was, never a ski lesson and barely a pair of gloves---freezing my butt off and absolutely terrified. I started pizzas and french fries (that much I remember him teaching me), but when I couldn't see the slope in front of me because it was so friggin' steep, I panicked. Well, panic led to more panic, which led to tears, which turned into me not being able to see because my goth eyeliner was on so thick that I was now blinded, and before you knew it, I was rolling downhill rather than skiing downhill. The biggest problem was that my ski didn't pop off, so I rolled and rolled and rolled and my leg twisted and twisted and twisted. Finally, the thing that stopped me was another skier going at the speed of light crashed on top of me. I got my my wish that day though... I had really wanted to ride a snowmobile. Lucky duck that I am, I got that ride. So I broke my ankle, wore a cast for 5 months, and the only thing that kept me from killing Chip was that I had to ride home on the bus for 11 hours, but I got to ride in the front seat while the other possessed demonic heathen youth rode in the back.

So I tell you this story to show you the power of Max Mikulak and that little orange bracelet. Chip died when I was 21, and I vowed I would never ski again since he wouldn't be there to watch me fall and laugh like a silly school girl. But then there is that bracelet that says Live Life to the Max that I wear every single day. And I thought about how forever 7 Max wouldn't be able to ski down that slope. I wanted to overcome that fear of the chairlift, the fear of putting on those ski boots after that stupid Achilles surgery, the fear of not having my kids succeed at skiing because their fearful, overweight mom couldn't get past the embarrassment of not fitting into a pair of cute southern California girl ski overalls. Well....I skied, and it all fit just fine. I rode that chairlift... alone!!! I rode and smiled, with tears falling down my cheeks. I sang and sang the whole time (maybe as a distraction---I did that when I was 3 years old and my family thought it would be funny to strap water skis on my chicken legs and pull me going 35ph behind a motorboat.) But what stands out the most was how close I felt to Heaven on that ski lift. Then, getting off was even better. I convinced myself that I would not fall because if I did, I had no idea of how I was going to get back up. So, I hopped off the lift, and moved my feet back and forth until before you know it, I was out of the way and the lift hadn't thumped me upside the head after all! Better than that, I skied! Down the hill...all the way...on two legs!!!!! I went up and down, up and down, up and down. I couldn't get enough. It was the biggest adrenalin rush I had experienced since childbirth. And while I can't honestly say that I felt Max with me the whole time (that kind of spiritual presence I think is reserved for the closest friends and family members), I will say that his story inspired me to get over my fear, get on that lift, and get my butt down that hill.

#2 - (tears) a writing by Erik Ludwinski in 2006 after relapse #2, perhaps an insight to what our children with NB have going through their heads, but can't voice it because they're simply too young.

Donna, Erik's mom, wrote today: I have been thinking so much about the hardships and tragedies that dot this NB landscape. My perspective is limited to the parent perspective, of course. I can't ever imagine what these kids really go through. We ran into Erik's BMT doc during our last visit to the hospital... and a flood of memories hit me since we haven't seen this doctor since he told us Erik had relapsed again, a year after his experimental second BMT. This was just a few months after Erik's short marriage collapsed, and Erik was severely heartbroken. The doctor hugged each one of us. Everything looked so grim. Fast forward 2.5 years: I wish so much every NB child could enjoy the same quality of life Erik lives today. I wanted to share with you what Erik wrote about a month after that news:Friday, December 22, 2006 5:36 AMLast night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?I've been called a lot of things since I started treatment. "Hero" "Awesome" "anInspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day.And what about all my fallen comrades? Does anyone know how guilty it can make you feel? Cancer doesn't just mess with your health--it changes your whole mindset.Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It's not that hard to completely brighten someone's day. Thanks for reading this, and pray that I get more chances to help others, because that's what I really want.~Erik

#3 - (cry) Cody JohnsonThis is so much like what we went through with Max. My heart is aching and breaking for this family. Let them know they are loved.

Last month Andy & I had the chance to meet up with a couple we used to vacation with (pre-kids) and with whom we are still very close. I had asked Shannon the favor of assembling the guestbook from Max's Celebration. As you may recall we had asked everyone to make a scrapbook page. That night she gave it to us - well, gave us two giant 12x12 scrapbooks, orange, of course, filled with notes, pictures, drawings...

We placed the books, tied neatly with a white ribbon and holding a red-airplane ornament, on the table. It sat there for three days. Neither of us could open them. Day four came, I untied the ribbon, and quickly walked away. I knew that these books would open a flood of emotions that I may or may not be ready for, so there they sat... waiting. Day seven I sat down, took Book 1 in my lap and opened the cover. I turned the pages, looking at each one, but quickly so as to take in as much as possible without completely losing control. I made it through both books. There were tears - especially when seeing what the children had written. There are pictures that I've never seen of Max with his friends. There are incredible notes from people I may never meet. There is so much love on each and every page. Thank you for the gift. Thank you for your memories of our son, Max. They help fill my heart up a little bit.

And, thank you, Shannon, for putting in so much time on this project. Half of the beauty of the books is the love that you so obviously put into them, making each page amazing.

...no, I haven't been able to sit and look at them again... yet. Just peeking over shoulders.

2/18/2009

Visit two sites today and offer words of encouragement to two different, but inter-connected sets of parents.

Paul and Nina lost their precious Eden a year ago today. As I've mentioned in previous posts, Eden Brunskow was a sweet girl who lived in Orange County, was treated at Sloan before she went to Vermont and Dr. Sholler for an extended lease on her too-short life. Dr. Sholler provided Eden's family with options when no one else would give her a chance to live for just a while longer. And I know Paul and Nina value that extra time like nothing else.http://www.caringbridge.org/visit/edenbrunskow

I have never met Cody's parents and don't even know their name. Cody is about where Max was in mid-August... likely weeks away from losing his battle with neuroblastoma. Cody and family are headed to the beach to make memories that unfortunately will have to last a lifetime. Please let them know that lots of us are thinking of them.http://deckapes.blogspot.com/2009/02/no-way-to-prepare-for-this.html

This must stop. We have to stop losing our kids to a cancer that is so aggressive, so misunderstood, and so neglected.

2/16/2009

Like our lives these days, this post recaps a rambling, seemingly disconnected series of events which, in the end, ultimately ends up making sense... I hope.

Today - another update on what we've been up to, and announcing the work we're doing to help fight neuroblastoma - and what you can do if you want to help!

First, the update.

We exited January and entered February with a little family celebration on January 31st (5 months for those keeping score). We ate, played and watched the sun set while sitting on the grass at Powerhouse Park - all things Max enjoyed to do, all the better since it was January! As I wrote in my previous post, we use Max's stuffed "Bruce" shark from Finding Nemo as his stand-in for pictures now.

We also have started visiting the new Children's Museum in downtown San Diego, which is a gorgeous building - mainly glass and steel - and a wonderful place to spend a few hours together as a family.

Everywhere we go these days, we leave behind little signs of Max.

We have also rediscovered the "bluff park" - I don't know the actual name of it. It's right at the end of our street and overlooks the San Dieguito river valley - to the east is Rancho Santa Fe and to the west is the Del Mar racetrack where the ponies race from July - September. But the real treat is hopping the fence and exploring on the ground.

Little Nic is growing up fast. He's at the age when Max was first diagnosed, and it merely reemphasizes the toll that neuroblastoma, and even frontline treatment (ie, from Oct 04-July 05) took on Max. We strive to keep a balance between keeping Max alive in Nic's memory and his heart, while allowing him to grow into hi own person. It's a hard balance to keep up.

Melissa and I are ready to announce our continuing effort to help defeat the beast neuroblastoma. We have formed a new 501(c)3 non-profit organization called Max's Ring of Fire, which directly supports the neuroblastoma program of Dr. Giselle Sholler at University of Vermont College of Medicine/Vermont Cancer Center. We chose to take this path after Max died in order to have a route through which his story could be told, and money raised through methods not available to us as part of the MagicWater Foundation (which Neil of Team Sam is continuing with).

In addition to raising money for Dr. Sholler's program, I have become actively involved in helping her to build a 5-year plan for her program. That plan is taking shape and will be posted here and on MaxsRingOfFire.org when it is ready. Friends of ours, Kristy and Steve Myers who hail from the planning and production disciplines in biotech, have been helping to process flow Giselle's lab so that we can generate a picture of where Giselle wants to be in 5-years, where she is now, and therefore the "gap" that needs to be filled. Max's Ring of Fire is raising funds to help close that gap (it will be significant, to be sure). We have been extremely fortunate to have the support of many additional friends other that Steve and Kristy, in this part of our lifelong journey that continues to be focused on Max. As we shift away from saving Max's life to joining the larger battle of finding a cure for neuroblastoma, it does not mean in any way that we have lost touch with what matters most to parents whose children are actively fighting this disease: Better, less toxic therapies now.

2/09/2009

Well, we're overdue for a post. Neither of us has felt like posting lately. For me (Andy), the reasons are quite simple. What can I say that hasn't already been said, or that isn't painfully obvious? The pain of missing Max grows more and more every day - I clearly didn't feel this way in the weeks after his death. Now, the shock and the sharp pain is gone, replaced by a dull, aching kind of pain. The pain that comes with the realization that what I'm dealing with is permanent (yes, logically I knew that when he died, but emotionally I didn't comprehend forever).

We continue to live, we might even thrive someday. But we will never be the same.

Leigh Saxon lost her little son Paul a little more than a year before Max joined him in heaven. Paul was treated in Vermont also by Dr. Sholler. In fact, Paul was right before (patient #1) or right after (patient #3) Max on the nifurtimox study which first introduced us to the wonderful Dr. Sholler and all the good people at UVM. Back to Paul... er Leigh. She writes beautiful essays. She started a blog to help write down her thoughts and feelings as she mourns. She recently wrote a post that explains perfectly what I'm going through right now. Thanks, Leigh ;)

Part of what has been haunting me lately are bittersweet memories of last January and February 2008. Looking back, it truly was the calm before the storm then. In some way, I think we knew that we were running out of time. And not that we gave up, but appreciated the gift that each good moment together was. It's hard to explain and put words to it, but the relationship you have with your terminally ill child is so intense, even when outwardly it doesn't appear to be any different. In a strange way, I miss that intensity but don't need the cirumstances that would allow me to have that same intensity with Nic or Hannah.

Since we haven't posted a real update since before Christmas, here are some highlights from Tahoe.
It snowed.
Then it snowed more.
Then it snowed even more.
Then it stopped for a day, and then started again.

Hannah and Nic had a blast. We like to think that Max really delivered for his siblings, guaranteeing lots of snow for them.

Nic, Hannah and "Max" (that'd be the stuffed Bruce the shark from Finding Nemo - Bruce is our Max stand-in for photos when we can add him).

The lovely tree and living room of our cabin at Tahoe.

This is the road right in front of our cabin. Looks pretty unnavigatable, right?

Morning light on December 26th.

Interstate 80 on December 26th, heading into Truckee to grab breakfast.

We had plans for a much more spectacular shot underneath a snow-covered cherry or crabapple tree on the sidewalk in Truckee, but Nic was throwing a fit and would only calm down for a picture by a window. It was extremely cold this morning, about 1 degree. In the sun it was okay. In the shade you got cold quick!

On the way home, we stopped in gold country to check out Sutter's Mill where gold was discovered in 1849 (4th graders in California study the gold rush as part of their California history). It was a very nice state park set-up. Later, we stopped for the night in Sutter Creek and had a wonderful dinner and ice cream floats at a true soda fountain. Hannah and I were supposed to go on a real mine tour but at the last minute Hannah wanted "off" the tour. I can't blame her. It was kinda creepy.

Sometimes I feel like moving to another state where the price of living is lower and I could endulge in my dream of being a shepherd. And then we come back from epic snow in Tahoe and find ourselves the next day at the beach in Del Mar making sand angels on a glorious December winter day. And then I don't feel like moving anymore.

Hannah paying homage to Max in front of his favorite "Mig-killer," the awesome F-4 Phantom on the USS Midway.

Soon, we'll update you on things we've been doing to:

Help find a cure for neuroblastoma (by starting a new foundation to help Dr. Sholler with her program at UVM)